Focal awareness seizures or auras?

Posted by kelspal @kelspal, Apr 13 9:43pm

My daughter has her neurologist thinks are awareness focal seizures. They are very short (5-10 seconds) and happen during stressful situations, when experiencing anxiety, and during and around her menstruation. Her doctor put her in keppra 250 twice a day and it didn't change much. Then it was increased to 500, then 750 and then 1000 mg twice a day. She still has an occasional aura feeling but not sure if its epilepsy. She is having side effects from meds; tired, crabby, etc and does not want to take drugs she may not need. She was going to ask to slowly wean to 750 twice a day and see if there are any changes. Has anyone had a similar situation?

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Profile picture for lzbthtyler @lzbthtyler

I have focal aware seizures in my right temporl lobe. I have tried the following medications: Briviact, Carbamazepine, Lacosamide, Lamotrigine, Keppra, Aptiom, and Clonazepam. I am currently on 250 mg of Xcopri-Cenobamate. I tried to go up to 300 mg, but it made me extremely sleepy, and I didn't feel well. I also take .5mg of Clonazepam if I have several seizures in 1 day.
Has anyone had any success with a medication I haven't tried?

Jump to this post

Hi, @lzbthtyler - I moved your post here so that you could chat with others talking about focal awareness seizures, such as @santosha @methel @kelspal @adoptivemother and others.

You mentioned upping your dose of cenobamate (Xcopri) but that it made you extremely sleepy and that you felt unwell. Is the 250 mg of helpful to you at all? When were you originally diagnosed?

REPLY

I have focal aware seizures in my right temporl lobe. I have tried the following medications: Briviact, Carbamazepine, Lacosamide, Lamotrigine, Keppra, Aptiom, and Clonazepam. I am currently on 250 mg of Xcopri-Cenobamate. I tried to go up to 300 mg, but it made me extremely sleepy, and I didn't feel well. I also take .5mg of Clonazepam if I have several seizures in 1 day.
Has anyone had any success with a medication I haven't tried?

REPLY
Profile picture for arkyjohn @arkyjohn

right frontal lobe focal seizures. similar semiology to you. sEEG in Dec 2024 with ablation (4 months of seizure freedom). scheduled for resection in August 2025.
currently on 150mg Briviact BID, and 400mg Xcopri at night. I was on Keppra for a long time but my dose got to 4000mg XR daily and had horrible mood effects. no mood side effects since switching to Briviact. I have no proof, but I felt like Xcopri made the biggest difference in my seizures. Xcopri was a very slow taper up. I am tired all the time, but used to it after being on medication for so long.

Jump to this post

Hi, @arkyjohn, and welcome to Mayo Clinic Connect. Hurray for the 4 months of seizure freedom and that the brivaracetam (Briviact) is helping with the mood effects you experienced on your previous seizure medication. Being tired all the time sounds rough. Glad you are at least getting used to it.

Are you planning on staying on the same medication, arkyjohn, or are you looking to switch to cenobamate (Xcopri) or something else?

REPLY
Profile picture for lzbthtyler @lzbthtyler

I have focal aware seizures in my right temporal lobe. I was diagnosed in 2016. Due to the medications not helping, I had Laser Interstitial Thermal Therapy LITT in 2022. My seizures were much less frequent and less intense after the surgery until January 2025. Since January 2025, my seizures have been different than before. I am still aware, but they are more intense. My right arm and sometimes my right leg will shake. My family says my bottom lip will tremble. I breathe heavily and immediately want to lie down. I do not have a known trigger. I get a rising sick feeling in my stomach, and then I will tingle or tremble, but I do not lose consciousness. Before surgery, I tried the following medications: Briviact, Carbamazepine, Lacosamide, Lamotrigine, Keppra, Aptiom, and Clonazepam. I am currently on 200 mg of Xcopri-Cenobamate. I tried to go up to 300 mg, but it made me extremely sleepy, and I didn't feel well. I also take .5mg of Clonazepam if I have several seizures in 1 day.
Has anyone had any success with a medication I haven't tried?

Jump to this post

right frontal lobe focal seizures. similar semiology to you. sEEG in Dec 2024 with ablation (4 months of seizure freedom). scheduled for resection in August 2025.
currently on 150mg Briviact BID, and 400mg Xcopri at night. I was on Keppra for a long time but my dose got to 4000mg XR daily and had horrible mood effects. no mood side effects since switching to Briviact. I have no proof, but I felt like Xcopri made the biggest difference in my seizures. Xcopri was a very slow taper up. I am tired all the time, but used to it after being on medication for so long.

REPLY

I have focal aware seizures in my right temporal lobe. I was diagnosed in 2016. Due to the medications not helping, I had Laser Interstitial Thermal Therapy LITT in 2022. My seizures were much less frequent and less intense after the surgery until January 2025. Since January 2025, my seizures have been different than before. I am still aware, but they are more intense. My right arm and sometimes my right leg will shake. My family says my bottom lip will tremble. I breathe heavily and immediately want to lie down. I do not have a known trigger. I get a rising sick feeling in my stomach, and then I will tingle or tremble, but I do not lose consciousness. Before surgery, I tried the following medications: Briviact, Carbamazepine, Lacosamide, Lamotrigine, Keppra, Aptiom, and Clonazepam. I am currently on 200 mg of Xcopri-Cenobamate. I tried to go up to 300 mg, but it made me extremely sleepy, and I didn't feel well. I also take .5mg of Clonazepam if I have several seizures in 1 day.
Has anyone had any success with a medication I haven't tried?

REPLY

Hi again! I just read this article, "Epilepsy vs. Psychogenic Nonepileptic Attacks" and thought of all of you participating in this post and discussion.
Here is the link:
https://www.myepilepsyteam.com/resources/epilepsy-and-stress-related-seizures/
Chris (@santosha)

REPLY
Profile picture for Chris Gautier, Volunteer Mentor @santosha

Hi @adoptivemother
First, I am very happy to know your daughter is doing better since she changed medication. Thank God!!! Being treated by specialists in epilepsy can make a great difference in epilepsy treatment and life quality.
Definitely, it would be great if we had an exam that could make the process of finding the right drugs and dosages easier. Who knows in the near future? Let's pray for that! Neurology is the medical area that has been mostly studied in recent years, but there is still a lot to be discovered and answered.
For sure, as you well said, living with epilepsy is a risk factor for depression, anger, anxiety and suicidal thoughts. But what causes that, the epilepsy in itself, the treatment, or both things together? I for example had depression and suicidal thoughts in my teenage years when my seizures started, well before having the diagnosis of epilepsy and starting treatment for it. I have overcome this depression with psychotherapy and spiritual support. When I started my epilepsy treatment with AEDs in 2019 I had depression again. Were the AEDs I tried the only reason for my depression? Hard to say, because receiving the diagnosis of epilepsy was something already hard to process, then the many other side-effects of the medication I had to deal with, quitting my job and professional life, etc. But I believe that some AEDs can for sure leverage this symptom that we with epilepsy already have some predisposition. I say that, because I got much better when just being treated with pure CBD (Epidiolex), though it did not control all my seizures.
Wishing you and your family a blessed Eastern!
Chris (@santosha)

Jump to this post

Hi @adoptivemother
When I commented on your post about an exam that could make the process of finding the right drugs and dosages easier, I had totally forgotten that I did a pharmacogenetic for AEDs in the past (2020) after having tried 5 different AEDs and not having success.
I commented on this in Lisa's post: https://connect.mayoclinic.org/discussion/lamictal-xr-issues/
Perhaps this exam could be helpful to your daughter? Discuss it with your doctor.
Chris (@santosha)

REPLY
Profile picture for methel @methel

She is not alone and you as a hurting parent are not alone. But epilepsy is usually an invisible disability. Therefore it’s not thought to be as common as it is.

I developed epilepsy later in life caused by a meningioma, but a doctor I consulted about something unrelated, but who saw Keppra on my medicine list, shared his daughter’s struggles with not being able to drive, like her newly empowered friends.

I believe the epilepsy foundation has an online chat, but don’t know how active it is anymore.

Best wishes to you and your daughter. There are many reasons to be optimistic as her treatments are fine-tuned.

Jump to this post

@methel @adoptivemother @kelspal
The online chat of the Epilepsy Foundation has been deactivated. For me, the Mayo epilepsy group has been the best one to exchange online experiences through messages and posts with others who are also dealing with epilepsy. I have learned so much with others here. My special thanks to @jakedduck1.
@adoptivemother, you said you wished so much for your daughter to join an epilepsy group to see that she is not the only one facing certain challenges. It took me more than 2 years after my epilepsy diagnosis to take this step and 1 more year to really expose myself in those groups. After my diagnosis treatment, I was not open to discussing my condition with others, except with those who are very close to me. Can you believe that I was somehow happy when Covid started? I know this is horrible, but when Covid started, I did no longer need to give further excuses for not showing up and felt relieved. It takes some time to accept this condition and the timing for that can vary from person to person. Last, my neuropsychologist has helped me a lot in the process of my epilepsy acceptance.
All my best to all in this group!
Chris (@santosha)

REPLY
Profile picture for adoptivemother @adoptivemother

I agree that the efficacy of the medications depends on more than just the seizure types but multiple factors that are dependent on the individual person. I wish there was a blood test that could just tell us which meds and which doses would work best! 🙂

My daughter appears to be on the upswing with her mood. It is hard to tell because sometimes a seemingly small setback can cause her to drown in sorrow but I do feel like she is increasingly improving since the med change. She also hasn't had any seizures to my knowledge since the Briviact was added!! I am so grateful the doctors at Mayo took our concerns seriously and went ahead and admitted her for the med change instead of having us do it at home. I think it could have taken months at home and it took a week at the hospital.

I am so glad Keppra is working for you! It really did control her grand mals well and we will never truly know if it was a factor in her depression, anger, or suicidality. I often wonder if seizure meds have that reputation simply because living with epilepsy is a risk factor for those issues to begin with.

Jump to this post

Hi @adoptivemother
First, I am very happy to know your daughter is doing better since she changed medication. Thank God!!! Being treated by specialists in epilepsy can make a great difference in epilepsy treatment and life quality.
Definitely, it would be great if we had an exam that could make the process of finding the right drugs and dosages easier. Who knows in the near future? Let's pray for that! Neurology is the medical area that has been mostly studied in recent years, but there is still a lot to be discovered and answered.
For sure, as you well said, living with epilepsy is a risk factor for depression, anger, anxiety and suicidal thoughts. But what causes that, the epilepsy in itself, the treatment, or both things together? I for example had depression and suicidal thoughts in my teenage years when my seizures started, well before having the diagnosis of epilepsy and starting treatment for it. I have overcome this depression with psychotherapy and spiritual support. When I started my epilepsy treatment with AEDs in 2019 I had depression again. Were the AEDs I tried the only reason for my depression? Hard to say, because receiving the diagnosis of epilepsy was something already hard to process, then the many other side-effects of the medication I had to deal with, quitting my job and professional life, etc. But I believe that some AEDs can for sure leverage this symptom that we with epilepsy already have some predisposition. I say that, because I got much better when just being treated with pure CBD (Epidiolex), though it did not control all my seizures.
Wishing you and your family a blessed Eastern!
Chris (@santosha)

REPLY
Profile picture for kelspal @kelspal

She has had a couple EEG's and an MRI and nothing showed up. We are seeing a neurologist at Froedtert Hospital in Milwaukee. We are in the process of trying to figure out if something else is going on. Thank you for your reply! I feel like her Keppra dose is high for the symptoms she was having. We are going to discuss with Doctor but sometimes they are so stuck on protocols.

Jump to this post

Hi @kelspal
I have lived with undiagnosed epilepsy for decades. My EEGs and MRIs also showed nothing.
There is a discussion called "First Seizure." here in our group I recommend you read: https://connect.mayoclinic.org/discussion/first-seizure/?pg=2
Have a good day!
Chris (@santosha)

REPLY
Please sign in or register to post a reply.